Monday, November 18, 2013

Brown Bears, Red Birds, Purple Cats

Written by Susan Wagoner

I believe by the tenor of the request, this flashblog is wanting uplifting, happy stories. I have those. I really do. But autism to me hurts more than it doesn't. We are going on our 14th month of our diagnosis and yes, Gigi is a wonderful little girl who I wouldn't trade for all of the NT girls (I have three of those as well) in the world. 

But autism to me, more often than not, means sorrow. 
My husband Mick and I didn't know of the magic of Eric Carle until we had our first child Audrey and were given some of his books. We were so enchanted that we would buy one whenever we saw one at a bookstore. (This is pre-Amazon days.) We didn't even mind that he wrote the same formula, again and again...and again, and well...again. We cheerfully bought them and read them again, and again...and again, and well...again.

Our first book we were given was "Brown Bear, Brown Bear What Do You See?" which, technically, is by Bill Martin Jr, but it is the pictures by Eric Carle that really make it. I swear that is how our oldest learned her colors and I dutifully pulled it out for the first year or so of each subsequent child's life to teach them as well.

Gigi really, really, REALLY loved the book and pre-diagnosis days, I realized that it calmed her when she was frantic. Since I had read it 1,000 plus times (conservative estimate), I was able to whisper it to her while we were out and about. I would whisper, "Brown bear, brown bear, what do you see? I see a..." and pause a few seconds for her to concentrate, focus and calm herself long enough to choke out "Red Bird" between tears. To which I would say, "Yes, Red Bird. I see a red bird looking at me. Red bird, red bird, what do you see? I see a..." and she would concentrate, focus and more calmly tell me "Yellow duck!" And so it went through the book in order: brown bear, red bird, yellow duck, blue horse, green frog, purple cat, white dog, black sheep, orange fish, teacher, then the children.

One of my most vivid memories of this calming technique was Memorial Day 2012. We hopped a train to the Mazda Museum in Hiroshima with our girls, a good friend, Jessica, and Gigi's Early Childhood Specialist Miss Holly. Miss Holly was going on vacation in June and then we were going on vacation in July so we wanted to squeeze in some extra sessions. Miss Holly thought it was a great idea to accompany us and be able to see Gigi outside of her normal atmosphere.

So many memories, so many thoughts, so much sadness of remembering Gigi climb under the train seat on the way there when a Japanese student sat by us, and actually... now that I think about it, that might be my only precise memory. The rest are just a jumble of a constant holding of my breath as I waited for the next meltdown to happen, encircling her with my arms, as well as my soul, as a meltdown was in full swing and then the pure exhaustion when we finally got home.

The one thread through the trip was Eric Carle. As we were walking from the train station to the museum, through the museum and onto the assembly line, I was nearly constantly reciting "Brown Bear, Brown Bear" in my littlest person's ear. Its methodical journey of the classroom's pictures to the real goldfish, teacher and students was like a lifeline that we held onto throughout that outing.

Pre-diagnosis, you don't think much of it. Pre-diagnosis, you congratulate yourself that you have found an almost surefire way to calm your little girl down when she is sad and happily recite away. Pre-diagnosis, you think it's quite charming that whenever she sees a color out in the world, she calls it by its Eric Carle name. A stop sign? That's a red bird. The pretty sky? That's a blue horse sky with white dog clouds. Her favorite color? Well, that's purple cat and you learn that it is much easier if you dress her in purple cat clothes at all times. You buy her purple cat Dora crocs and don't bat an eye when she insists on wearing them day and night. You even come accustomed to jumping out of bed in the middle of the night, if one of them happens to fall off, to quickly hunt around the crib to put it back on.

Pre-diagnosis you plan a "Purple Cat" 3rd birthday party...which was super cute, don't get me wrong. But the birthday was 3 weeks after the diagnosis and IN the diagnosis the Developmental Pediatrician speaks of Gigi's odd love for the "Brown Bear" book, specifically her love for the purple cat.

And you look back, post-diagnosis, and think "How did I miss this?"

Post-diagnosis, you go to church and realize that you are much less bothered by the people in the congregation behind you who don't know about her autism and who might think she's just a naughty child (or you are a lousy parent), but find that you are uncontrollably sad by the people behind you who know about her recent diagnosis. Because as she darts under the pew as soon as you go in, you can almost feel the people behind you understanding why she does that. "Oh. Now I see. She has autism."

And you DON'T want them to understand. Because you DON'T want it to be true.

Gigi is so cute and sweet and as the youngest of four awesome daughters is more social than a lot of kids with autism. So no one really goes to "autism" at the first thought.

Like last month. Gigi and I took her sisters, Olivia and Claire, to their drama classes at The Rose Children's Theater. We had an hour or so to kill. We went downstairs and hung out. I grew bored and decide to chat up the poor fellow Mom near me, a first grade teacher, who was trying to do her lesson plans for next week. She had an Audrey too, who was in Olivia's class. We talked names and ages of our daughters. I mention Gigi has autism. She says, "Really? I would never have guessed!" I say, "Hang out with us for 20 minutes."

It didn't take twenty. Not two minutes later, Gigi begins spinning around and around, reciting "Brown Bear, Brown Bear." From beginning to end, over and over. I see the look of "Oh, now I see" come across the woman's face.

And I wish someone could whisper a calming phrase from a beloved book or song in my ear because I want to have a extreme meltdown, cry and yell over and over "I HATE YOU AUTISM!!!!!!!!!! I HATE YOU AUTISM!!!!!! I HATE YOU AUTISM!!!!!!!!"

Brown Bear, Brown Bear, What Do You See? I see a Mommy's heart hurting, that's what I see. That is what autism feels like to me. 

2 comments:

  1. We're a Brown Bear house, too!!! My daughter's favorite is 'yellow duck'. I'm so sorry for your sorrow. I was there last year. I know it sounds trite but I promise that if you focus on the beauty you *will* feel better and, more importantly, so will your daughter.

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  2. I'm sorry you're hurting and I hope things get easier for you soon. It sounds like you know Gigi well and have an amazing connection with her through this book--hang on to that! It probably feels like autism has changed everything, but it sounds like what's really changed is how you and other people in your life understand Gigi's behavior. I hope you can return to a place without the hurt, where you can appreciate the harmless weirdnesses and deal with the difficult ones like meltdowns and darting under pews. Gigi sounds lovely. Best to both of you.

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